What began as a diary of sorts to help me cope with Multiple Sclerosis, has turned into a book of portraits I have painted that, more often than not, have very little to do with MS. This is for the artists who taught me the most beautiful things come from pain, and my sister, Stacey, who also has MS...

09/25/2017

Ugly Like Me Broadcast for Jessi Zazu (I didn't mean to have a breakdown, but we grieve, we must grieve in order to be authentic).

I promised I'd embarrass myself and share the broadcast for Jessi. I lose it. But, she was worthy of my grief. That said, I am in a much better place and not crying all the time. Here is the feature on MS&Me Radio

Ugly Like Me: A Tribute to Jessi Zazu

In this particular broadcast you are hearing about Jessi Zazu’s death and my love for her, Those Darlins (consisting of her, Nikki and Linwood), her art and what she represented on so many levels. This Ugly Like Me broadcast started by going in one direction and… I end up on a total other planet. My heart wouldn’t let me go anywhere, but THAT planet. And so it is. At the time of recording it, Jessi had been gone for just a few days. I was struggling hard. So, I basically have a meltdown on air. If I do say so myself, it is a rather..eloquent breakdown. So they kept it and used it as a feature! Huh? Right? I know!

Seriously though, I was haunted by dreams of her tiny body. I will not give details. It wasn’t awful in that it was scary or gross. It was actually quite the opposite. She actually looked beautiful. It made me ache. I’d wake up hurting more than I already did, in places I didn’t know I had. Even sleep couldn’t relieve me of her passing. I kept looking around at the world for the first time, knowing she wasn’t in it. I was beside myself; so I caved, finally, in this broadcast and I am so grateful I did. I know we are the future of the MS movement and we are UP and all for positive change that will lead to a cure, but sometimes we need to be human and feel and GRIEVE in a HEALTHY way. This was part of that process.

Linwood, of Those Darlings, has been a darling to me, telling me happy stories of her at the end, and just really helped me when HE was the one who just lost his best friend. He was so kind and also let me use a Those Darlins song to open this show since it isn’t commercial and it is for the ill. That was a BIGGIE to me, that and he is meeting me in Nashville soon. Both of those, and this show, these little lovely earthquakes have helped me coped with the loss of Jessi. Jessi was not my best friend, we didn’t have sleep overs etc., but she was still someone I looked up to, especially after her announcement that she had cancer…and it spread.

I no longer felt like a geek super fan after that announcement, I felt like her peer. A sister she could look up to. A woman she could fight for rights with. My entire life and look at Jessi, tilted in a big way when she announced her cervical cancer, stage 2, and then that it had spread. The song she wrote three years before her diagnosis, Ain’t Afraid, that was more about getting sober, began with, “There’s a tumor growing on my body, and I don’t know what lays in store. But I… (hold that I for a long time) ..ain’t afraid, I ain’t afraid anymore.” Ironically, or not, THAT became her battlefield cry…thousands of adoring fans wore shirts that said Ain’t Afraid and rang it out with her. We stood by her. We stood with her. We were her. Only, we are not. Know I am still sick, but I am still here. I feel like Jessi left something behind that I am supposed to pick up and run with. It is the strangest feeling.

I can’t say everything I need to say about Jessi in four paragraphs. She deserves a book, a trilogy even, but I can say a few things about her that will connect to YOU and your illness. Jessi WAS afraid of her illness. She knew that she basically didn’t have much of a chance in that last year, as she walked around with a breathing tube running up her nose. She was so beautiful, tubes or not. But Jessi refused to feed that fear. Instead, she fed her art. She insisted she wasn’t afraid and just kept plugging away, doing anything she could to mold this UGLY into something BEAUTIFUL. She had music sessions with Linwood where they created music (Linwood, I pray you really do see it as your job now to go forth with that music. You rock. You can!, no pressure!), art exhibitions, decorated the hospital rooms that were bare for other patients, won the hearts of nurses who are now, according to Linwood, Those Darlins’ fans. Listen to her. Look at her art online. Learn an instrument. Create. Turn this ugly monster of a disease into something beautiful. Just like Jessi did.

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Ugly Like Me Broadcast for Jessi Zazu (I didn't mean to have a breakdown, but we grieve, we must grieve in order to be authentic).

I promised I'd embarrass myself and share the broadcast for Jessi. I lose it. But, she was worthy of my grief. That said, I am in a much better place and not crying all the time. Here is the feature on MS&Me Radio

Ugly Like Me: A Tribute to Jessi Zazu

In this particular broadcast you are hearing about Jessi Zazu’s death and my love for her, Those Darlins (consisting of her, Nikki and Linwood), her art and what she represented on so many levels. This Ugly Like Me broadcast started by going in one direction and… I end up on a total other planet. My heart wouldn’t let me go anywhere, but THAT planet. And so it is. At the time of recording it, Jessi had been gone for just a few days. I was struggling hard. So, I basically have a meltdown on air. If I do say so myself, it is a rather..eloquent breakdown. So they kept it and used it as a feature! Huh? Right? I know!

Seriously though, I was haunted by dreams of her tiny body. I will not give details. It wasn’t awful in that it was scary or gross. It was actually quite the opposite. She actually looked beautiful. It made me ache. I’d wake up hurting more than I already did, in places I didn’t know I had. Even sleep couldn’t relieve me of her passing. I kept looking around at the world for the first time, knowing she wasn’t in it. I was beside myself; so I caved, finally, in this broadcast and I am so grateful I did. I know we are the future of the MS movement and we are UP and all for positive change that will lead to a cure, but sometimes we need to be human and feel and GRIEVE in a HEALTHY way. This was part of that process.

Linwood, of Those Darlings, has been a darling to me, telling me happy stories of her at the end, and just really helped me when HE was the one who just lost his best friend. He was so kind and also let me use a Those Darlins song to open this show since it isn’t commercial and it is for the ill. That was a BIGGIE to me, that and he is meeting me in Nashville soon. Both of those, and this show, these little lovely earthquakes have helped me coped with the loss of Jessi. Jessi was not my best friend, we didn’t have sleep overs etc., but she was still someone I looked up to, especially after her announcement that she had cancer…and it spread.

I no longer felt like a geek super fan after that announcement, I felt like her peer. A sister she could look up to. A woman she could fight for rights with. My entire life and look at Jessi, tilted in a big way when she announced her cervical cancer, stage 2, and then that it had spread. The song she wrote three years before her diagnosis, Ain’t Afraid, that was more about getting sober, began with, “There’s a tumor growing on my body, and I don’t know what lays in store. But I… (hold that I for a long time) ..ain’t afraid, I ain’t afraid anymore.” Ironically, or not, THAT became her battlefield cry…thousands of adoring fans wore shirts that said Ain’t Afraid and rang it out with her. We stood by her. We stood with her. We were her. Only, we are not. Know I am still sick, but I am still here. I feel like Jessi left something behind that I am supposed to pick up and run with. It is the strangest feeling.

I can’t say everything I need to say about Jessi in four paragraphs. She deserves a book, a trilogy even, but I can say a few things about her that will connect to YOU and your illness. Jessi WAS afraid of her illness. She knew that she basically didn’t have much of a chance in that last year, as she walked around with a breathing tube running up her nose. She was so beautiful, tubes or not. But Jessi refused to feed that fear. Instead, she fed her art. She insisted she wasn’t afraid and just kept plugging away, doing anything she could to mold this UGLY into something BEAUTIFUL. She had music sessions with Linwood where they created music (Linwood, I pray you really do see it as your job now to go forth with that music. You rock. You can!, no pressure!), art exhibitions, decorated the hospital rooms that were bare for other patients, won the hearts of nurses who are now, according to Linwood, Those Darlins’ fans. Listen to her. Look at her art online. Learn an instrument. Create. Turn this ugly monster of a disease into something beautiful. Just like Jessi did.